I have never been busier at Inspired by Autism. The 10 hours I have pledged to the project are getting stretched way beyond this nearly every week. Sometimes it is a bit much and yet I still feel the desire and drive to do my best. I could and would never want to let down any person or family struggling with the lack of awareness and injustice that seems to characterise so many authorities and services these days. The small but significant improvements that I can make to people’s lives are however a great reward. I feel at home with the social enterprise model.
Health and Social Care Partnerships and their governors, the Integrated Joint Boards are flawed. They are flawed because any perceived benefits of joint working are overshadowed by the reduction in budget and the need for cuts. They are flawed because of how they have been set up and structured and how there is a lack of accountability of their actions. Indeed the politicians and policy behind them are flawed because their prime objective is the saving of budgets. Those extolling the virtues are selling snake oil. They know the cost of everything and the value of nothing.
The challenges for people living with autism have never been greater and the need for independent support and representation have become virtually essential to a positive outcome today.
At a personal level the HSCP I work for have decided that social care training is now reduced in importance. Proof of this is the 10% plus pay reduction that has been imposed on me and my family while my workload has increased greatly.
To be honest sometimes I think I should be trying to earn more money for my family but I take much pleasure in the knowledge that social enterprise is different. It is about benefitting the community and improving life for the people who live there.
The impact of social enterprise is measured not solely in monetary terms but also on the positive change to the community. Local authorities, health boards and HSCP’s are simply about money these days. From the massive salaries and expenses politicians, senior managers and heads of service take and their desperate struggle for self preservation, to throwing their weight behind poorly thought out and untested initiatives that sound and are too good to be true, there is a complete lack of consideration for the wellbeing of the individuals their posts exist to serve.
If those in positions of influence could adopt a little of the social enterprise ethos perhaps the situation locally and nationally would be a little less grim.
Andy’s birthday was in May, a distant memory now that Autumn is almost upon us.
As always it was so hard to think of anything he would truly and definitely like for a present. In her usual thoughtful way Jenny attempted to buy him gifts that he might enjoy. Andy tends to go for small things he can carry about that tick some boxes for him in a sensory manner. The attachment is normally short lived and the object is either discarded, destroyed or removed if it is dangerous or becomes upsetting.
Some examples were kitchen implements – large spoons or spatulas, straws, watches, perfume bottles, pens, plastic bottles of sauce, condiment sachets in cafes and measuring tapes – the cloth ones and the retractable ones and a large variety of lids. Each object has a significance to his sensory processing – stimming with stick like objects, smell and taste of perfumes and food products, flapping with objects and running water over lids. Arranging condiment sachets on a table and then putting them back seems to show his need for sameness and repetitive actions. Interesting maybe but hardly birthday presents!
When Jen purchased a hammock swing in May for Andy’s birthday I had my doubts. He spent the summer on his conventional swing again ticking a regular sensory need that seems to calm him. Everyone else enjoyed the hammock right enough!
Clearly Andy was watching us all use the hammock but he merely laughed when we encouraged him to have a go. Well this afternoon four months after his birthday he finally found his way on to the hammock. It takes Andy time to assimilate anything new. His preference usually being for sameness and routine. In his own time however he finally took the step to try the hammock and clearly found it to his liking.
Jenny’s knowledge of Andy’s way of being and what he enjoys paid off once again. We just required to be patient.
I felt sad this week when Andy became very interested in our landline phone and was constantly lifting it and listening to the dialling tone until it went to that continuous beep. I reflected with Jen on why he was doing it and realise it was probably another example of the repetitive behaviours that are a characteristic of his autism. I could not help thinking about how he can’t say hello or speak to someone on the phone though. Maybe he was wanting to speak but just couldn’t do it. Maybe he thought if you pick up the phone you can speak like everyone else and tell us all about his life, his hopes and wishes…….. The more I watched him the more it bothered me and left me thinking fuck autism it really sucks sometimes. I want to hear my precious boy speak to me, to call me daddy just once.
Sometimes you just have to let the emotion wash over you. I was fine a short while later.
Apologies to all my autistic friends. I love you all and mean no disrespect.
Jen and I are as hard working and committed as the next carers but we are only human and get tired and worn out sometimes. The constant ups and downs, the demands of Andy’s care needs and all the usual stresses and strains of family life can leave us feeling flat and worn out sometimes. Even with us both pulling our weight and help from family, carers need help and support. The school holidays can be particularly difficult and often we feel greatly stretched at this time of year. We are feeling it just now even with hard won supports like respite, sibling and young carer support, shared care and the support of Andy’s wonderful carer Nuala.
I spend a lot of time helping other carers to find out about and access these types of supports. They are essential to the survival of many families in similar circumstances. They are not perks or privileges but rather the crucial support that allows carers to do what they do best while saving the public purse millions of pounds each year.
Many thanks to Sense Scotland respite and sibling support services, Crossroad’s Young Carer support, Shared carers , our Nuala and family for helping us manage.
What a strange life we are living at the moment! Due to the latest bout of Andy’s hyperactivity we have all regularly been up through the night over the past while.
Last night was particularly difficult for us all. Andy appeared distressed and agitated for long periods and his only distraction was the water running from the taps in the bathroom, shower room and kitchen. Jen and I fell into our usual pattern of sharing the responsibility by taking turns at supervising and dozing throughout the night. By the time it was light again Andy had calmed a little but simply could not resist the urge to keep playing with the taps. I decided to take a chance on encouraging him to go to bed by putting the water supply off. It could have produced more agitation but in fact it seemed to be more of a relief to Andy and although he never settled to sleep until after 9am it appeared to help.
We all spent most of today sleeping but by early evening were all on the go again. Body clocks out of synch with the world around us, the day was over before we began our waking hours. Andy’s anxiety was a slow burner but by 8.30pm he was stomping around clearly distressed. I took him out in the car dressed in pyjamas and when he indicated he wished to go to a local holiday village for a milkshake I just drove up without thinking much about it. It was a little strange then to see families on holiday having meals and drinks and generally enjoying themselves. The place was very busy – oh yeh it’s August – and we endured quite a few stares as Andy ran about the place still very hyperactive and overwhelmed. I realised I was quite dishevelled myself and we must have made quite a pair as we struggled to fit in to this parallel universe. After we managed to get back to the car I reflected on how I felt – fuzzy headed, out of step and different from those around us. I wonder if that is how Andy experiences life most of the time?
We are facing another potentially long night and as I write this it is way past midnight. Andy is dashing around in and out to the garden carrying a piece of pizza and playing with a rather bemused puppy. His life is driven by such different goals and yet he is in a world that fails to recognise or accommodate him as he is.
This is an old blog that had resurfaced on FB and was attracting a little interest again. I had been attempting to give different family perspectives on Andy’s autism.
Continuing with family dynamics this is dad’s perspective.
Andy was named for Big Andy Ritchie, the best ever footballer to play for my beloved Morton. Jen went along with it because we liked the name, but for me it was all about Big Andy. He was a magician with a football and brought the most incredible joy and excitement into our lives. I played a wee bit myself and when my kids came along I had a notion that one of them would be a footballer. Things have not worked out that way however. We knew before Andy was diagnosed that he had autism. We delayed putting the wheels in motion because Jen’s mum was battling cancer and we were having another baby. Life was so busy. Andy was in many ways a good baby and really bonded to me and I wasn’t sure (still am not sure) what difference a label makes. Many around us however doubted what we told them about Andy and I suppose it was as much about them to a degree.
The diagnosis was a formality in a lot of ways but also a confirmation. I cried at the diagnosis. I cried because it officially confirmed what we already knew. I cried for what might have been, but most of all I cried because I loved Andy so, so much and it was not the life I wanted for him. To me he is and always will be perfect in every way and this seemed to be saying he wasn’t.
Life as Andy’s dad is both a privilege and hard, hard work. His support needs to live in a neurotypical world are high and this affects most aspects of our lives. We are learning constantly about him and his autistic world and it is a very interesting world! It is demanding of time and has no awareness of, or respect for the “normal” world we neurotypicals live in. He experiences the world differently and has little interest in our world most of the time. I guess the secret is to accept and embrace Andy’s autism and support him to live as full and as joyful a life as possible. Mostly I feel we do this but at a cost of limiting our own life. Generally this is fine but I regret the times I let my other children down by not being there or by not having the energy to support them as much as I would like. The privilege and rewards are in the connections we make with Andy and at these points in life the joy is over-whelming and as a parent and a family there can be few better things. Even though he doesn’t speak (yet) he conveys his love for his mum and dad and brother and sister in his own way.
As his dad I sometimes feel guilty about the amount of time and effort I put in with him. It is frequently more than for my other two beloved children but I have come to realise that as a parent you respond to your children’s needs intuitively. Often that need is greater for Andy and although there is risk (of neglecting the others) it is a risk I have to take because he needs the support. As a family we are a strong unit and Andy is at the centre of that. Andy’s care needs also affects the amount of time Jen and I get to do anything together. Fortunately we are both completely devoted to the care of our children. When I consider Andy’s autism and its impact on our family I am not sad as I know that he is very special. Wee Andy provides a joy and awe in our lives similar to and beyond that provided by Big Andy on a football park and for me it couldn’t get any better than that!
Our wee pup is now 6 months old and his positive contribution to all our lives just keeps growing, just like him!
One of our main hopes for Bailey was the potential for a constructive relationship with our 10 year old autistic son Andy. We have been at times simply stunned at their interactions. Andy’s desire to touch, explore and lark about with his new friend has been wonderful to see. Bailey’s tolerance, gentleness and enthusiasm for their relationship is testimony to his beautiful nature.
Where human interaction – eye contact, social contexts and verbal commands – are so often overwhelming for Andy, with Bailey interactions are much less so. In fact it is Andy who very often initiates their “conversations” and as befits the interactions between a child and puppy the context is generally one of fun and frolics!
On Andy’s recent return from a respite visit the often problematic transition back into our home and family was eased greatly by his immediate happy reunion with Bailey. The pressure to face all the human contact that characterises our reaction to his return was simply deflected as he went straight to our beloved puppy, smiling and laughing as he put his head onto Baileys in greeting. They had their usual dance of mutual affection up and down the hall, a mass of stims and a vigorously wagging tail.
It was another great moment from the gifts this wee dog brings to family life.
A Family Outing!
Last week I read a great blog by a wonderful autism mum about the difficulties autism families have simply leaving the security and safety of their own homes.
We often have the same problem here. It tends to mean you are forever weighing up the pros and cons of attempting even simply outings. We are fortunate to have a car and this helps as it almost acts like a mobile extension of a familiar and safe place for Andy and can avoid major problems in the community. He often refuses to get out of our car when we arrive at a planned destination though.
I was thinking about all of this today when we decided to try a short family outing to Benmore Botanic Gardens. It was our first outing of the holidays with the whole family, including our new addition, Labrador pup Bailey.
The sun was shining by the time we all piled into the car and it felt great to be at least trying a family excursion. We were all aware however that as always we might require to change our plans at short notice.
Today was a success though and Andy was happy to get out of the car and into the gardens for a walk. It felt lovely to be strolling through this beautiful place with all our children and the dog. We were a real family doing a “normal” activity. We even managed an ice cream in the cafe afterwards.
As many other families head off on holidays abroad or embark on a program of activities with their kids it can be difficult for autism families to simply survive school holidays at home. As a parent it felt good today to be doing even a small thing as a family.
An early post today and a plea to consider the future well being of the vulnerable in our society. Those who are at the mercy of state funded support and services and do not have a voice to speak up for themselves are at a pivotal point for their future wellbeing. As a civilised and decent society we are at a similar junction. This is an issue that will affect and touch every life and every family, with the exception of those with extreme wealth, at some point now or in future. Robust human rights protection is needed more now than ever. As the gap between those who have and have not grows the most vulnerable need the safety net of a welfare state and NHS more than ever. This support has never been at more risk and already the cuts are brutal and real.
Without a legal protection and accountability this situation is set to become so much worse. Someday the health and wellbeing of us all will wane and despite seeming distant now it is almost certain we will require these very supports. This help is the very essence of humanity and if removed through greed, hate and discrimination we will have lost our very soul.
Please consider prioritising all our human rights today.
It’s the thing that drives me most and yet conversely can be my Achilles Heel. The intense love and desire to nurture, protect and advocate for a child with a disability can be something of a double edged sword. A couple of times recently while on duty giving autism presentations I have experienced a little of the raw emotion that can so affect my functioning. Hearing the first person account of a wonderful autistic woman provided an insight into some of the challenges in the life of an autistic child. It was a chance to catch a glimpse of the experiences usually masked by the limitations of autism and as such I was spell bound. I was also trying hard to hold my feelings together. The chance to gain a degree of this type of understanding is so very valuable. To hear it first hand can evoke powerful emotions. The price of feeling a little wobbly was on reflection worth paying.
These emotions, whether triggered intentionally or not can be a great disadvantage in formal care reviews for parents and carers and is something that requires to be acknowledged and avoided where possible. Whether it be losing your temper, becoming upset or simply being intensely uncomfortable showing vulnerability in the headlights of a gathering of professionals it is one of the most common difficulties faced by parents and carers. It is a structural inequality in a system set up for professionals by professionals.
This week I have upgraded my page into more of a website.(inspiredbyautism.org) I have started to include further information that I hope is helpful. Under the Carer’s Resources menu you will find some tips for negotiating reviews. Stay strong and remember that displays of emotion arise from your deep love and care.